Multiple autoimmune diseases

Posted by denadet @denadet, Jan 5, 2019

I was wondering if there were others with multiple diagnosis. I have 8 autoimmune diseases and 6 other long term illnesses. I can’t find anything on the internet for that many. Is that a wierd thing or just they don’t study that kinda thing.

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@peach414144

I do not know what category to put this reply into but here goes. I have three autoimmune diseases but now I have another big problem. Besides having all my other medical issues I have hypothyroidism for about thirty years AND NOW HAVE secondary hyperparathyroidism. Talk about your ups and downs. The paperwork from Quest shows I have had this for over two years and have been complaining to the nephrologist of the symptoms and pain but was told all is fine. Soooooo naturally I went to another doctor who immediately took tests which revealed the diagnosis. This took two years of not working with this problem and has placed me in the kidney category of stage four. Which could have been prevented if the doctor would have told me so I could watch my diet and etc. so to stop this progression. I now have worse eye problems and think I have TED thyroid eye disease due to the hyperparathyroidism. Again, there are no doctors in my county who address this diagnosis. Losing more eyesight. It is now taking away the enjoyment of watching television. Not much else to live for but I do still want to live. Is there an angel out there for me?

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@peach414144 I’m so sorry that you’re running into more problems. Do you trust the new doctor who diagnosed you with kidney disease? If so, carefully follow all of his instructions on diet. Don’t dwell on what the first doctor didn’t do, you have a good doctor now.
Have you seen an ophthalmologist for the thyroid eye disease? Please do so, if you can.

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@gema98

Liver biopsy

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who does liver biopsy?

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A Gastroenterologist will do a liver biopsy.

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@becsbuddy

@rexsan20 you say that you are worried about other things that may happen. Maybe the best solution is to live your life the best that you can and don’t worry about tomorrow! You probably don’t remember an old Doris Day song, “Que sera, sera, whatever will be, will be. Que sera, sera”

What worries you?

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One of my favorite songs! And, definitely appropriate for many occasions.

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@gema98

I also was told I have autoimmune disease about 4 years ago then told low platelets and fatty liver disease. Had liver biopsy this year and diagnosed with PBC and cirrhosis. I thought that was and enough! I have been on thyroid pills for 23 years and didn’t think much about it. I am so sorry for everyone’s pain and guess I better start reading more about this.

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The liver is remarkably resilient. It’s of course vital that you do everything possible to protect your liver. Eat well, no alcohol or drugs that harm the liver, watch your weight, walk and stay in decent shape. It’s good you got the diagnosis early enough that you can slow the progress of cirrhosis.

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@frawlsco

thank you for responding. I will let you know what happens . I plan on setting up the appointment after the new year. I guess I see them first and then they request all the doctors files? I just hope it may be one problem which just hasn't been treated correctly. I don't know.

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Get the appointment now as it may take months to get in. If you have history with other Doctors, take a drive and sign the consent to share information. Then give the list to the Dr you made the appointment with. I never have kept copies, but with a diagnosed condition, you probably should get copies from the past few years. Don't put it off. Your PCP may also help you get the latest bloodwork labs about two weeks before the appointment. It is good to do the work in advance, so you have a better starting point. Most info is online so it is important to remember that so the Dr can access the images. BTW it has save me some unnecessarily repeated test.

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My gastrointestinal doctor is who set this up for me as out patient in the hospital.

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@athenalee

The liver is remarkably resilient. It’s of course vital that you do everything possible to protect your liver. Eat well, no alcohol or drugs that harm the liver, watch your weight, walk and stay in decent shape. It’s good you got the diagnosis early enough that you can slow the progress of cirrhosis.

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Thank you! I truly hope so, I guess I should have asked questions back when they said blood enzymes were off. I never thought something like this was possible! I was a little overweight, ate frosting as a child as my mom made wedding cakes and others and I used to bake. I’ve had about 20 mild drinks in my life as I don’t like flavor of alcohol or coffee. Never did drugs or smoked, boring life as I put it! So now I eat chicken, turkey, whole grains, fruit, veggies.

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@oldkarl

@gema98 You are right to start serious looking for additional disease. One thing we are learning quickly is that the "RARE" in "rare disease" really applies more to the DIAGNOSIS of the disease than to the "existence" of the disease within a person. I have a bunch of pathogenic, or damaging diseases in my family which we had never even heard of. Several of the family are being killed by diseases supposedly rare, but are just now coming to light. In my lifetime of 81 years, I have tracked over 300 symptoms, signs, etc, of so-called RARE diseases. Truth is, humankind is just now learning to take most of them seriously. And most of them do not have approved treatments yet. Things like Walker-Warburg, and LGMD2m and Clarkson's, and blood type AOB, etc. So do keep looking. My thyroid issues started about 65 years ago, and heart about 82 years ago, etc. But I am still alive, after being informally diagnosed at the ripe old age of 10 minutes by a smart country doctor and his nurse. @oldkarl

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Ahhh! dear oldkarl good to hear from you again. Let us have a race as I am now 84 and still holding on with both hands and feet. Yes, I think the old ways of teaching and learning is the way to go. The new young doctors of today have an attitude. I have had one say to me (In not a good tone of voice) "What makes you think your any different than the others?" as she walks out of the examining room. I was not surprised and so did not show my response. Sorry I even typed this info in. The opthamalogists do not have the experience or knowledge of how to treat anything but the "normal" so again I go travelling to other parts of the country to get help. I love and stand by our wonderful and beautiful America. But I think we need to appraise our ways in the medical fields. If I am wrong I will work with this as I am not all knowing. I thank all of you for caring.

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@frawlsco

thank you for responding. I will let you know what happens . I plan on setting up the appointment after the new year. I guess I see them first and then they request all the doctors files? I just hope it may be one problem which just hasn't been treated correctly. I don't know.

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@frawlsco, Wait times may be longer than typical at the moment, so I agree with @marye2 that you would be well advised to submit the request now or have your doctor make the referral.
Here is more information about requesting an appointment at Mayo Clinic http://mayocl.in/1mtmR63

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I have multiple diseases and wrote to Mayo asking for appointment with Primary Care Department thinking they would play quarterback and direct me to physicians to see.Surprise.Answer was that no one could see me.Lesson learned, I guess is to contact doctor who is specialist in particular ailment. However, this would mean seeing about 5 physicians. Since my underlying disease is autoimmune, I thought a generalist would think about what was happening in my body and perhaps come to some creative conclusion which would
then send my in the proper direction. Great disappointment since Mayo is one of the greatest medical centers in the world. It seems that no one looks at the patient as a whole anymore. We are split into separate pieces and often physicians don't maintain contact with each other which would help solve what's happening. Perhaps I'm just repeating what was said more briefly right before my post. But in the ancient days, internists did this sort of thing. Great strides have been made, but someone needs to think about the whole person. Each disease is not happening on its own. Good luck to all of us with multiple problems.

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@petuniamom567

I have multiple diseases and wrote to Mayo asking for appointment with Primary Care Department thinking they would play quarterback and direct me to physicians to see.Surprise.Answer was that no one could see me.Lesson learned, I guess is to contact doctor who is specialist in particular ailment. However, this would mean seeing about 5 physicians. Since my underlying disease is autoimmune, I thought a generalist would think about what was happening in my body and perhaps come to some creative conclusion which would
then send my in the proper direction. Great disappointment since Mayo is one of the greatest medical centers in the world. It seems that no one looks at the patient as a whole anymore. We are split into separate pieces and often physicians don't maintain contact with each other which would help solve what's happening. Perhaps I'm just repeating what was said more briefly right before my post. But in the ancient days, internists did this sort of thing. Great strides have been made, but someone needs to think about the whole person. Each disease is not happening on its own. Good luck to all of us with multiple problems.

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I was seen at Mayo Clinic in Rochester MN in September of this year. I asked my Primary Doctor to call the Mayo Clinic Physicians referral line at 1-800-533-1564 to help get me a referral. My Doctor did this, then I was contacted by Mayo Clinic. I had to set up a Mayo Clinic account, then they sent me forms to fill out online to determine whether or not they would take my case. This was at the end of June, so it took three months to get my appointment, and I am grateful to been seen at Mayo, it is an amazing place. Kathryn

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